Tuesday, September 4, 2012

We've all heard the phrase...and maybe some of you have even uttered it...

"As long as it's healthy!"

Usually this comes up when a woman is pregnant. "Do you know what you're having? A boy or a girl?" and the Mother will reply, "I don't. And I don't care - as long as it's healthy!"

For some reason, this phrase has always tugged at my heart...even LONG before I had children of my own.

Everyone wishes for a healthy baby. Of course they do. The phrase, in itself, is not a rude thing to say. It's become a universal catch phrase - and the intentions behind it are more ill-thought than ill-intentioned. We all wish for ourselves...and each other...and for the unborn baby...health.

But what if we don't get what we wish for? What then...

Today is the first ever "World Cerebral Palsy Day". It's a day that focuses on people with CP from all over the world. It's not just a day to bring awareness and education...but it's also a way for people with CP to let the world know how they want their lives to change. Today I will be sharing private home movies that I've never shared with anyone. (And I humbly ask for your sensitivity...)

I have been Gavin's "spokesmom" since the day he was born. I look forward to the day that he can tell me to stop talking for him - that I'm getting it all wrong. But until then, I will continue to do my part to speak up for him, speak out about him...and change people's perceptions and attitudes. One person at a time. Gavin has a diagnosis of Cerebral Palsy, but that is truly a small part of his life story thus far. If you are a regular reader of this journal of mine, you've already watched him accomplish far more than what we were told to expect.

I never cared for the expression "As long as it's healthy" before Gavin. But since Gavin's birth, the words have taken on a whole new meaning. I think, for the most part, the expression is used as a way to stay hopeful during a pregnancy. Everyone wishes the best for their children and their families. And we were no different.

This is me...standing in Gavin's nursery...right before we left for the hospital. Ed thought I was crazy, but I wanted to take a minute to videotape ourselves for the last time as a family of two (and one adorable dog). We had no way of knowing that I wouldn't be back in that room with my baby for a month...

The universal phrase... "As long as it's healthy"... well, one could argue that didn't happen for us. The silence and rushing around in the delivery room was a pretty good indication that all was not well.

I signed up to be a Mom. Just as I wouldn't say, "As long as it's smart." or "As long as it's good looking." or "As long as it's straight."...I didn't say "As long as it's healthy." To be honest, now that I know so much about genetics and chromosomes and all the thousands of things that could go wrong - I think it's a miracle that any child is born "perfect" or "healthy."

Once Gavin was born, I went right into Mom mode. I didn't feel disappointed or 'jipped'... I felt protective and concerned. And love. Although to this day I am haunted by this particular moment caught on film. I told Ed all through the pregnancy that I wanted a photo of Gavin in the delivery room. He took his job seriously and asked the nurse before Gavin was whisked to me and then to the NICU. I should have told him to forget it. I should have said to the nurses that I could meet Gavin later. Keep the oxygen on him, I should have said. I wonder if, in my selfishness for a hello and a picture, I deprived Gavin from time without the oxygen. I have been reassured a million times, but it's one of my biggest regrets.

As Ed and I spent time in the NICU that would become our home, we were overjoyed getting to know our son. Ed had never held a baby that small - or changed a diaper, ever. He jumped right in and did it all. He even gave Gavin my colostrum as soon as it came in. We called it "Liquid Gold."

I spent a lot of time doing Kangaroo Care and pumping breast milk so he would grow and get stronger and get closer and closer to going home.

For all intents and purposes, Gavin was many people's worst fear. Can you imagine? People who would say, "As long as it's healthy" didn't mean this.

So to all of you who are pregnant I say - don't be afraid to be me. And to all of you who are sitting in the NICU next to an isolette - praying that they will tell you that your baby is fine - healthy - not 'imperfect'... don't be afraid to have a Gavin. And to those of you who just got the diagnosis - Cerebral Palsy. Do not despair! Gavin, as many of you know, is the joy of our lives...and many others. He is in many ways just like other kids his age! He has favorite foods and favorite movies and favorite books and songs. He loves crazy amusement rides and the ocean. He adores his Daddy and his little brother. He is now making friends and riding a bus to school.

When we sign up to have children, we aren't guaranteed anything. They could be born with a disability or develop one years later. They could be born with a defect or develop defects of character as adults. They could be born in perfect health, or have a serious illness. The important thing is - they are ours.

We left Gavin's nursery filled with hope on September 28th, 2007. We welcomed him into the world with hope on September 29th. We brought him home for the first time on October 28th, 2007 and the three of us (and one adorable dog) learned together how to navigate our new world. And then six days before Gavin's first birthday, we were told he had Cerebral Palsy. But what did that mean, exactly? Nothing much, really. It sure didn't change the way we were caring for him up to that moment.

When I stop to think about that silly phrase, "As long as it's healthy," it kinda makes me sad. Because if I had wished for that...and my wish had been granted...none of us would have the honor of knowing Gavin.

16 comments:

Beautiful post Kate thanks for sharing such intimate moments!My cousin Sandy was born in 1959 with a diagnosis of CP. At that time the thing to do was put children like this in a home. My aunt and uncle choose to keep Sandy at home with her brother and two sisters. Being just one year older than Sandy, when we were young we spent a good deal of time together with my grandmother. Sandy went to a special school, as at that time CP kids were not mainstreamed. Sandy was/is included in all family functions. We vacationed in St Croix together and many days in OCNJ! Sandy works in the family business, stuffing invoices into envelopes and takes her job very seriously! My Aunt her primary care giver passed away two years ago after a brief illness. Sandy now spends her time between her two sisters. My uncle has health problems as well but until recent years he was amazing with her. Sandy touches the hearts of everyone she meets! She can't speak, but she sure gets her point across! Our family is blessed and better for having Sandy in it!

Kate - I am a lurker and I have to say that your post always brighten up my day and this post did not disapoint. You managed to summarize in a beautiful way what I feel whenever I hear the phrase as long as its healthy. Thanks for all you do. :)

Your honesty is so touching. Sometimes you say the things that I haven't been able to put in my own words. Thank you for that and thank you for this post. You are so right when saying, "I signed up to be a mom." I did and I love my child, just the way he is...I do always say he may not be perfect, but he is certainly perfect for me. I look forward to reading more of your words and hearing about Gavin's preschool, my son Grant will be starting preschool next month. I am so scared, but feel encouraged by reading your words. Thank you for sharing.

I have been guilty of saying that exact phrase in the exact way you describe it in years past.

Then I had Callie. Callie was 'imperfect' by the worlds standard (and she still is, lol!), but she is perfect for us! She has opened our eyes to so many things, to the miracle of 'normal development' to the truth of what it means to persevere, to keep trying and failing many times, for weeks or months before being able to do something that others take for granted...she is such a blessing and a joy!

When I hear someone say 'as long as baby is healthy' now, it makes me cringe inside. Because often, I know the person, and that they really would love a child regardless of an 'imperfection' be it a disability or an illness, I say, as gently as I can, "As a mom of one who isn't healthy by most standards, I can assure you that you will also love a baby who isn't healthy for whatever reason. You will love whatever baby God has blessed you with."

Wonderful post - straight from your heart. I have no doubt you are the momma that God wanted Gavin to have - and he has the daddy he was meant to have, too. AMAZING parents, I have no doubt. Much LOVE & HAPPINESS to your beautiful family!

Kate, this has to be one of my favorite posts ever. I am a teacher's aide and through that became a personal aide to 2 special needs boys over a few years. One had an undiagnosed syndrome(by the time he died at 4 years old he could only eat by bottle, could not walk or talk, had a shunt and hydrocephalus, wore 18m size clothing, etc.). The other has CP. July of last year my unborn baby girl was diagnosed with T18 and spina bifida. A friend told me that me being put with those 2 boys at work was God's was of preparing me for what lie ahead, and I believed it. By the time she was stillborn on Sept. 29th at 31 weeks I wished she'd only had spina bifida or Down's. I wanted, and felt so ready for, my special needs baby. I didn't care what she had or didn't have.

What sweet, sweet memories; especially Ed and Gavin bonding and you and Gavin kangarooing. I love my kids for each of their special talents and know their lessons taught on Earth are priceless. Praying for you each and every day....

I thought of one more thing, too, Kate. You worried about the time Gavin had no supplemental oxygen while getting a quick picture. I feel very confident in letting you know his sounds and the bond of hearing your voice after listening to you for months in utero did more to emotionally super-charge him than any very brief dip in sats. Never, ever underestimate the power of powerful nurturing at moments of great need. You gave Gavin the critical boost that only you could give. That moment gave him more will and drive to survive than anything else could have... you are a great mom who did exactly what you both needed to seal the bond that supersedes any other. Hugs and prayers from our home to yours. :-)

This post really touched me. My prayer has always been "let my baby come home." I started my journey to motherhood 2 years ago. With my first pregnancy, we decided to not do any genetic testing as it would not change the love we already felt for our baby. We would love and parent any baby we were blessed with. Two years later, my prayer has not changed. I have survived 4 fertility treatments, a pregnancy loss, miscarriage and a chemical pregnancy. I lovingly mother my children in heaven and pray I can do the same to a child on earth. Thank you again, Kate, for sharing your heart with us.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can click the donate button (you don't need a PayPal account!) or, if you'd prefer, mail a check made out to CCIU and mail to Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!